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  • My First Real Shower in A Month

    A month ago, I started this InterStim journey and, due to the logistics of the process, couldn't get my lower back/butt wet at all. Obviously, this forced me to be pretty innovative when it came to showering; we installed a handheld showerhead and I would sit on a plastic stool in the tub, carefully spraying the parts of me I felt I could clean easily.

    Yesterday, though, I asked my doctor at my post-op appointment if I could get the tape and incision wet, and he said a big yes. So, today, a bit dubiously, I stripped down, turned on the water like a normal person, and stepped into the shower.

    Whoever thought something so simple could be so incredible! The hot water rushing down on me, staying warm because all of me was in the water at once, being able to give my body a good lathering with my favorite shower creams that I'd been saving for this first shower and enjoying the scent... it was almost spa-like, right there in my own bathtub.

    Of course, I did try to avoid getting scented soap or anything other than water near the still-not-completely-healed incision, but this shower was close to heaven!!
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  • #2
    That is so great Jen!!:woohoo: :woohoo: I'm sure that you feel much better after being able to take a real shower. I can't imagine how weird it is not to be able to take a normal shower for that long. It's so great to hear that you are doing so well. Hope things keep on getting better and better for you.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

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    • #3
      Any time I've been in the hospital and couldn't shower, it was close to heaven when I did. AND shampooing your hair again is great!
      Tons of support,
      Jaime

      IC angel helping families in need for the holidays. [email protected]

      Comment


      • #4
        Oh I bet tha did feel good........:woohoo:
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          Oh man, I am sure that felt SOOO wonderful. I often cant help but guilty about how much I enjoy taking nice hot showers. I guess because so many people in the world live without this luxury we consider essential. That still doesnt diminish my enjoyment of it though!
          How are you feeling now Jen? A month after the surgery? I hope you are feeling better. Did you end up getting the time of work for you to have a decent recovery period? I read about the whole situation on your myspace page.
          Hope you can get some sleep now that you feel squeaky clean!
          Sarah
          Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

          Comment


          • #6
            Oh, yeah, Jen. I know that feeling, like coming home after a long hospitalization. Yum!
            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn
            ___________________________________________________

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


            On the Beach with IC

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            • #7
              You know...I have always said that if someone could just bottle that feeling you get when you are able to take a shower and get really clean; they would have enough money to buy the world.
              Sharon

              Shopping??? Did someone mention shopping? I'll get my hat... ;-)

              Where I can be found most days.



              Link to the ICN Patient Handbook:
              http://www.ic-network.com/handbook/

              Link to the IC Diet:
              http://www.ic-network.com/diet/


              IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment


              • #8
                :woohoo:
                "Never Give Up."

                To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                My Photobucket Link:
                http://s237.photobucket.com/albums/f...ramack_photos/

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                • #9
                  I'm looking forward to another shower today

                  Sarah, I was able to get some time; about a week and a half to two weeks. I am thinking of going back tomorrow to work just a short week -- to ease into it, as they say. I think it would be pretty tough to just throw myself into a full work week just a week and a half after having the permanent implant surgery, even though I'm healing nicely. My boss wasn't pleased, but he pretty much had to allow it, since it was a surgery.

                  Of course, not one person from work even bothered to send a quick email to see how I've been doing.... made me very upset at first, since they have sent flowers and cards to others who have been out for an extended period, but now I've just resigned myself to the fact that they do not like me and that is a toxic environment for me to be working in. At this rate, I just need to go back and get things done, and I have to start a job search! I have started that last one, the job search, and haven't heard anything yet. But I can always hope!!
                  ****
                  Jen

                  *Diagnosed with severe IC in 2004
                  *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                  *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                  *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                  **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                  Comment


                  • #10
                    Jen, I'm sure it can't be that they don't like you. I suspect it's because you are management --- if you were a lab aide or clerk, you would be more apt to get the flowers, etc. I know when I was at the hospital, when I was promoted from Administrative Secretary to a management position it made a real difference. People seem to think management people are somehow different and not in need of support and encouragement.

                    Please take it easy going back to work; don't overdo. You've been doing so well it would be tragic to ruin it by doing too much too soon. Is your doctor okay with your going to work?

                    Sending gentle hugs,
                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      Yeah, Dr. Evans said I could return to work at any time. I am a little bit more cautious than he is since I am the one that still has that incision -- I guess I'm still a little paranoid that I'm going to bend or twist just right and pop that little sucker right open again. I know it's probably closed pretty darn well, since it's not THAT big, but you know, there's always that worry...
                      ****
                      Jen

                      *Diagnosed with severe IC in 2004
                      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                      Comment


                      • #12
                        Jen, I dont blame you for being cautious! It just breaks my heart to read about all of that stuff going on at your work. I know how much work issues can affect your life, at home and at work. I think that Donna is right, I dont know how anyone could not like you! Another thing I thought of is that maybe they are jealous of you? Because you are so smart and capable and also have a great marriage, etc? Sometimes people feel threatened by people they perceive to have great lives and who are maybe more talented than they are!
                        I think it would be a good idea to kinda ease in to it. Your body is still recovering and that takes energy, so you will probably get tired easier. I hope that if you do go in, you have an okay day!
                        Love Sarah
                        Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

                        Comment


                        • #13
                          I bet that felt great, hubby probably heard you oohh and aahhing like the herbal essence shampoo commercials
                          'The will of God will never take you where the Grace of God will not protect you.'

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                          • #14
                            omg doesn't it just feel great when you first step out of that first shower? I just felt *human* again :::::aaaahhhhhhh:::::::::
                            Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

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                            • #15
                              Congrats, Jen, I know it felt great!

                              ~Claudia

                              "A heart is not judged by how much you love; but by how much you are loved by others."
                              ~ The Wizard of Oz

                              "If I ever go looking for my heart's desire again, I won't look any further than my own
                              back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


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